A life-raft, bridging the gaps between chronic illness, the medical system and living.

"May I be a guard for those who are protectorless . . . A guide for those who journey on the road. For those who wish to go across the watter . . . May I be a boat, a raft, a bridge." --Shantideva

Dear Frannie,
Q. My spouse is a wonderful husband and caregiver except we are running into a problem in the area of our sex life. He seems to want to have sex with me during the times when I am either too fatigued to perform, or in terrible pain. How can I explain to him that this is not possible for me, without forcing him to go outside my marriage to fulfill his sexual needs?

A. This indeed is a complex dilemma, and one that requires looking at all the angles before attempting a solution. In as much as you may feel pushed upon by your spouse, there are positive messages in the fact that he or she wants physical intimacy with you. Most likely your spouse continues to want an intimate relationship with all aspects of partnership. Your spouse continues to see you as a sexually attractive mate, and desires closeness with you.

All of us at one time or another, have realized that our biggest stress can be attempting any kind of physical activity. Physical activities are the ones that are hardest on our bodies, and it is our bodies that have the illness. Some of us find that we have an amount of anxiety before attempting any physical activity, as we often ask ourselves, "Can I perform this task? Will it make me fatigued? Will it hurt? Will I be worse tomorrow because I attempted it?"

Sexual intimacy with a partner or spouse is a physical activity. It increases our heart rate and has been equated to physical exercise. No wonder many of us, have difficulty maintaining a healthy intimate life with our loved ones. When we have a chronic illness, we feel we can never depend upon our bodies to function normally at predicted times. Sometimes we become fatigued, sometimes we are in great pain. These are realities for all of us. What do we do in this situation when someone we love wants intimacy with us at that time?

And for some of us, physical intimacy may cause physical pain. What do we do then? Do we go ahead with a sexual relationship even though we know it will physically hurt us and it is difficult to get pleasure from it? Do we deny our partner a physical relationship because of this? Do we risk our partner turning outside the marriage to meet his or her physical needs?

As in many situations with Chronic Illness, communication before the next situation you encounter with your partner is always the best way to go. When your partner is asking for physical intimacy, is not often the time to have a long discussion about it. It is better to discuss it at a calmer more objective time before it happens.

Approach the subject with openness and loving kindness. Remember, sexual intimacy is often a way of showing love and affection toward a partner. Express your feelings toward them, tell them that you love them and wish to communicate your feelings through your physical relationship but share your fears about pain and fatigue with him or her. Ask your partner to help you come up with solutions or things to try that may cause less pain or be less strenuous for you. Come up with a signal system for the days when you do feel like sexual intimacy would be ok, and a loving signal for times that you don't. Discussing this with your partner at a different time than when he or she suggests intimacy, is a good step in the right direction toward communication and emotional intimacy.

For some, the act of sex itself is impossible due to pain issues or medical restrictions. In this situation it is really imperative that you discuss with your doctor and then your spouse how you will approach these needs on the part of your spouse or partner. Are there other ways that do not cause pain or stress on the body that you can share physical intimacy perhaps without intercourse? It is important for you to be candid with one another about the possibilities and most of all it is important that your partner knows you love him or her deeply, and your difficulty with having sex has to do with your illness and has nothing to do with your feelings toward them.

For some in pain, the solution may be as simple as timing your pain medication so that it is effective during sexual relations. For others, the solution might be giving pleasure in ways outside of intercourse. And still some of you, due to doctors orders, may not be able to participate in sexual intimacy at all. This is when your loving communication is of utmost importance.

But the most important thing of all in a relationship is communication. And if you express to your partner in a loving way, your fears about physical activities, and more specifically, physical intimacy, asking him or her for suggestions, you will begin a dialogue on the subject and perhaps come up with some solutions that both you and your partner can live with. Most of all, letting your partner know that he or she is still attractive to you, and still the person you fell in love with and want to be intimate with, will keep you close emotionally, which is the most important of all.

Dear Frannie,
Q. The worst part of having my illness is that the repeated attacks (direct or indirect) by some doctors on my character and judgment just create more and more anxiety and depression. Don't doctors know that if they would just validate our experiences that we would finally be able to let go of so much anxiety and helplessness? Don't they realize that we can only be put through the ringer so many times before we lose faith and hope in ourselves and the system?

A. Out of all the questions I have received over the past year, this one keeps coming up over and over again. Depending upon where we are in our journey toward wellness, we will all find ourselves in a very vulnerable state from time to time....a time when our self-esteem isn't as strong as it used to be. This can be a time when we feel no energy to give to any new relationship and needing more nurturing than ever before.

Doctors have been taught to deal with information objectively. They were trained in physical medicine and finding the solution to problems. They were never trained to say "I don't know," instead they were trained to find answers. As we all know, no doctor knows all the answers. And saying "I don't know" can either be an honest answer or can be an admission of defeat to a doctor.

Doctors are people too. There are good people and bad people out there in this world. There are kind people, and not so kind people. There are those with big egos and those with small egos. There are those who can admit defeat, and those who cannot or will not.

So what is the logical answer for those people? Many times it is to pin their blame on the problem instead of admit they don't have the solution. And if you are the patient coming into that kind of doctor's office and if you have low self-esteem that day, pinning the problem on you may be something that you may personalize and take to heart.

But the reality is that you are presenting a doctor with a problem. If this doctor cannot be kind and compassionate to you, and your personalities don't mesh, then it is time to find a new doctor. Doctors cannot evaluate your emotional state in 10 minutes of time and do not have enough information to say a problem is or is not n your head. Obviously, this doctor is not the one for you.

But another thought to be considered is that after time and time again of seeing doctors, and having them reject you as they have in your question above, it is possible that you have developed some anger toward the profession. And if so, and you are not aware of it, you will bring this anger with you to every single encounter with every new physician that you see.

There are also those of us for whatever reasons, are at a point in our journey where we need nurturing from our doctors. Just as with people in general, not everyone is nurturing and kind. Some doctors find that giving emotional support takes away from their objective thinking. These doctors may not be nurturing, they may not fulfill the needs that you as a patient who is struggling may have. In fact, their responses might feel harsh and uncaring, pushing you deeper into a depressed state or one of helplessness.

So be aware of how you are feeling before you enter a doctor's office. And look at this doctor closely to see if he or she fulfills the needs that you may have both as a clinician and as a person. Each new doctor, is a new experience and one that should not be shadowed by past experiences. In my book, when I went into the office of my new doctors, who later became my heroes, I tried to be as objective as I could with them, and not allow the anger of my past experiences to cloud our visit. After seeing over 25 doctors, I found the ones who changed my life, who were not only knowledgeable but also nurturing, caring and very special souls.

Success is possible. Find the doctor who fits most with you. Do not allow a doctor to judge your state of mind. If you feel your symptoms are physical, walk the path forward and determined to find yourself a doctor you can work with. They are out there, I promise.

Dear Frannie,
Q. A friend of mine was recently diagnosed with ALS. I'd like to know what I can do to help him and his family. They live in another state, so I can't prepare a meal and run it over the way I would do if they were near.

A. First of all, let me commend you for asking the question that you have. Many of the patients I encounter often dream of the day when someone close to them will ask what they can do to help them and their families. It is a sign to me that you are a very kind, compassionate and caring friend. I believe a hearty "thank you" goes out to you from all of us who suffer with a Chronic Illness.

To me, knowing you care as you do is the biggest gift of all. In the coming months friends and family members may slow down and stop visiting your friend. It is difficult for one to watch what your friend is going through, and unfortunately it is human nature to identify to ones own life, the struggles that your friend endures, causing some friends and family members to feel estranged and frightened by the possibilities of illness or adversities in their own lives.

My most important advice to you is to be consistent and persistent. Stay in touch with your friend and his family. Send cards, letters, and small tokens of your thoughts, like chocolate, and books on tape, videos and things that make you think of him. Call often, and even if there are lapses in conversation, always reassure your friend of your friendship. Talk about old times, make him a memory book. Send old photos of you together, and new photos of the things you are doing. He will not feel badly that you are living your life. He will want you to be happy and it will make him feel like an active part of your life to be sharing those things with you.

Most of all, don't lose touch with him. Stay with him through his journey. It may be hard and emotional for you, but understand that this is merely your own fears taking hold. Just because your friend has become ill does NOT mean the same thing or a similar thing will happen to you.

Ask your friend what he is learning from his journey and listen to him. And when speaking becomes difficult for your friend, make your own cassette tapes, or video tapes that he can listen to with your voice talking to him. This might be comforting and sweet to his ears, while bringing you closer to him.